(Psst -- have you all picked up your super-commenter award below? Do it. It'll make you feel good.)
I know I mentioned that I've been wanting to write a post or thirty about Fiver and school, but I've held off for two reasons:
a) you must be sick to death of hearing about it. You must be! I certainly am.
b) I don't really know what to say. All of my words are bottle necking until they form a congealed lump at the base of my throat which threatens to erupt into tears or shrieking at any moment, neither of which are considered appropriate behavior in mixed company.
All joking aside, this is a public blog, and while I love you all dearly, my friends (yes, you!), I cannot control who comes to call. At times, I feel limited in what I can divulge, out of respect to my son and the people who work with him. I love my kids' school and I feel a responsibility to be loyal to it. I won't get into any specifics, other than to say that the adjustment seems like it is equally hard on Fiver and his teacher. It is breaking my heart.
Rob and I have talked each other into a stupor every night, and we have always come back to the same thought: no one was prepared for The Real World: Fiver. And make no mistake, it can be grueling.
Fiver In Theory is an easy proposition on which to agree, because he is a winning child. He is funny, warm, bright, affable, and kind. People generally like him, they just do. When seen in short duration, more than one person has told me that they can hardly tell he has any problems. And that is true, to a certain extent. He is remarkably adept at compensating for his difficulties.
But Fiver In Theory and Fiver In Practice are two different animals. The only way to get Fiver is to be with Fiver. There is no amount of explanation that can prepare a person for him, and believe me, we've tried.
A large part of the problem is that he has neurological deficits that have no name. It is an incredibly frustrating position. Yes, we can tell people he has Sensory Based Motor Disorder, a category under the larger umbrella of Sensory Processing Disorder, but that is only part of the equation. He has other, unexplained physical problems, as well as some behavioral issues, all of which fall under the category X. SPD + X = Fiver.
His teachers, while well intentioned, are not quite on board with his needs yet. I truly believe they want to help him, but they are now faced with the reality of what it takes to help a child like Fiver. If a person is inexperienced with his conditions, spending six hours a day with Fiver can come as quite an awakening.
We have been in what seems like constant contact with his teacher, but it is quickly becoming clear that we will need to meet with an ever expanding list of professionals before we get to a place where Fiver is thriving.
I will be honest when I tell you that in my darker moments I feel eminently unqualified for this job. If my only task was to love him with every fiber of my being, then I would have no problem. I would give my own life for this child, but I cannot give him other people's acceptance. It's not in my power to make people understand him or help him, but it is in my power to be his advocate.
During one of our marathon conversations, Rob said that in many ways Fiver is one of our crosses. He requires more attention, more work, and more worry. But as much as he is our cross, he is surely one of our most precious and treasured blessings. He brings us more joy, more love, and more strength than we ever dreamed of at his birth.
It is true that in enrolling Fiver, his school has agreed to pick up our cross and help us bear it, but it is just as true that they get to carry our blessing as well. Our goal is to balance the cross with the joy. It's a tall order.
In the meantime, while I'm trying to find this balance, St. John Bosco will be hearing from me. Often.